Summer catch up

Time to do a little re cap of this summer. 
Lucy was blessed last month and it was wonderful.  Lucas gave an amazing blessing, I was sobbing through it.  Lucy looked gorgeous in her dress, we took pictures but Lucas still needs to edit them.  I will post once they are finished. I was greatful for that day and everyone who came. 
The last couple of months were rough for me, I was praying for a way to get motivation again.  And guess what?  I found it...
I tried these awesome skinny wraps that are simply amazing really.  And then I decided to let others know about it.  I have missed teaching and making a difference in people's lives. And I have found that.  I honestly don't think it was a coincidence that this just happened.  It was an answer to my prayers.  To have people you care about feel better including yourself, is honestly a wonderful feeling.  I just ordered some other products and can't wait to try them out as well.  Seriously am so excited about this and love these magic wraps. 
Lucy has hypsarrythmia again and the spasms are there too.  Totally a bummer..  When I first found out I just had to shrug my shoulders and say to myself that's life I guess.  Our Neurologist we had before described it like you are in a Coma.  That is completely horrible.. I do know when Lucy has glimpses of awakening.  She is in there, and I can see it when it happens.  Like the time she was in the tub and looked right at me and was laughing and smiling for a good 3 minutes or so.  I sob while I write this, because it's wonderful when those moments happen.  But, it's heart breaking knowing my daughter is in a coma like state most of the time. Dr. Sweeny asked me if she responded to steroids the first time.  He is our new neurologist, since our other left to another hospital. I think he assumed that it didn't and it was just her chromosome issue causing her to be non responsive.  When I told him she acted different on steroids he acted more hopeful.  He said then we are going to try again since she responded so well the first time. 
Lucy will turn a year old on the 27th.  I was wondering on what to do for her Birthday.  But, I knew the answer. She will get her Birthday cake and ice cream just like any child would.  She may have a frail body, but she deserves to have her special day the same way. I will just be her arms and her hands to help her. 
Thanks for those of you that have prayed and fasted on her behalf.  She needs those prayers constantly.  Pray her Hypsarrythmia goes away this time. 

Compiled News

I just wanted to list some updates real quick...

1. Lucy is going to be blessed on Sunday, I am so excited!  It will be certain that my makeup will be all over my face after Sacrament meeting. 
2. Lucy is getting a helmet!  Her head is really flat and needs help.  I picked out a cute design that has hearts on it.  It was ordered yesterday, so hopefully we will get that on her soon!
3. The Government may finally help Lucy here soon!  That would be great!  It will really help to have that money to give aid to Lucy and the equipment she will need.  Cross your fingers and say a prayer that everything goes according to plan! 
4. We went to Yellowstone and had our car break down in the Park, glad my parents were there to help us. The starter went out at got it fixed at Old Faithful. We spent more than we planned, but it was still nice to get away for a little bit.
5. I am pretty excited about having a garden, it's been fun!  Not evertything has worked, but it's been great to have.  I am trying to pollinate the watermelon plant with a paint brush.  Nothing is growing on it, but finally the cucumbers plants are producing cucumbers.  I was getting worried about that, but looks like it will work out.  Our Corn is growing nicely and the green beans have been producing really well.  And of course our Crazy Pumpkin patch is all over the place.  I planted some carrots and cilantro in place of where the onions were supposed to grow.  I don't know know what happened to the onions, I must have done something wrong.  The cilantro is growing and so are the carrots.  I got the cilantro in the dollar section at Target.  It had a little plastic green house to grow them.  They really work!  I love that little dollar section at Target.
6. I cut down the crazy plant that is wrapped around our mail box. Lucas named it "IT" from the Adamms family. 
7. We got our fence mostly fixed, the company that did it is horrible and haven't finished the job. And they over charged us, they aren't getting paid till they fix it.  They are called Pro Link Fence, just so you know to never go to them if you need a fence.
8. Lucas and I are playing Halo again, we love that game. 

Hope you all are having a great summer!

Think before you speak

You know that saying "Think before you speak" people need to do that.  I mean we all have those moments, but the things I have heard lately are beyond idiotic.  Here are examples.

"How come your child has a feeding tube?  What is wrong with her?"
"Lucy is 9 months? She can't be 9 months, she doesn't look like 9 months."
"Why does the baby have a fat head?  Why does she have fat feet too?" 

Oh and my personal favorite..

"Don't take this the wrong way, but I was expecting your baby to look like a "Vegatable" when I saw her."


Yep, and more of that happened all within a week.  One of the comments was from my niece the "fat head" comment.  But, it still hurts.  Another lady tried to talk about my baby, but I brushed her off.  90 percent of the comments that were said, were from people I have never even met.  How insensitive and rude are you?  I know you are curious, but it's none of your business.  If I don't know you, stay away from me if you are going to get in my business.   Unless, you are going through it yourself. 

I don't go to Relief Society for this very reason.  I don't want to be asked a million questions from women I haven't met.  I am really done talking about it with people that I don't know.  I almost lost it on a woman today.  If I wouldn't have been at Church I might have exploded, I am near the breaking point. 

Yes, something is wrong with my child, what's your excuse?  At least she has one. 

Vegas and other things

 I was given the opportunity to go see Celine Dion in Vegas with my friend and her sister and mother.  We had a great time chatting, watching a drunk guy at the bar that was embarrassing himself. He also resemble my Dentist which now I am worried it was my Dentist... And at the end of it all we went to see the concert.  It was very different from her other shows, it seemed sort of random.  And then Nudity was thrown in there, so not needed.  I think Celine is amazing, but that concert wasn't like the others.  I still had fun though, and am super glad I was able to have a mini getaway and be surrounded by a great family and watch my favorite singer perform.

  Right before the getaway Lucas went to Brazil for work.  He had a great time, and brought back lots of treats.  Luckily, I didn't think any of them were good so I haven't eaten much of it.  Lucas had a great group of guys from work he went with.  He thinks highly of them and I always hear great things about them. Glad he enjoyed his time while he was out there.
   Lucy is on new medication now along with her medicine from before.  She takes Topamax along with Phenobarbital.  She takes the Topamax twice a day and the Pheno once a day.  I put the Topamax on baby food for her to eat since it doesn't dissolve.  I am lucky to have her eat orally, that isn't usally the case with these little ones.  Any time I tell the specialists she doesn't really take a bottle too much, but she eats baby food they are surprised.  A lot of it based on the fact that she has problems seeing.  I guess it's hard for children to want to eat when they have a visual impairement.  We work constantly with her eyes to help her see. 
   Appointments have become too much for me, but I do it anyway because that is what Lucy needs. I frankly am sick of talking about what is wrong with Lucy with the specialists/ or with those I don't know.  I don't mind talking about it don't get me wrong, it's just when I get loads of questions constantly in a short period it takes a toll. And I wish so badly I could take a break from these appointments to ease the chit chat of what is wrong.  List of appointmenst are: 3 times a month eye specialist, Once a month Special Needs Specialist, Once a month Nurse,  Twice a month Physical Therapist, Twice a month Occupational Therapist, and at least once or maybe twice a month a visit to Primary's or somewhere else concerning Lucy. Luckily all of my Early Intervention/Eye services are at my home.  I feel overwhelmed at times, just trying to remember all the exercises I need to do is hard.  I try to remember them all, but sometimes I don't. 
   I am feeling the itch to go camping, luckily they have handy little fire pits to buy these days.  Lucas bought one over the weekend and I am eager to try it out.  It helps me feel like I am camping a little bit, even if I'm not. 
   I have days I feel so alone and depressed. Don't feel guilty, I just sometimes feel sad like we all do sometimes.  Lucas takes on a lot of projects to help us with money or mostly just out of the kindess of his heart for family or friends.  I admit the last couple of months he has been working a little more than I am used to or feel I can handle.  Hopefully he will take a break soon :(.
   Lastly, I would like to say to Julie Decoria how much you inspire me.  Julie was in the Jenny Phillips fireside group with me.  We traveled to New Zealand and Western Samoa one summer to perform and thats how we met each other.  Julie has a sweet little Daughter that is Dawson's age.  She has a Deletion of the 13th chromosome.  She writes a beautiful blog, which inspires me everytime I read it.  She knows what's I am going through and I feel her pain and she feels mine. It's nice to not feel alone in this.  Thank you Julie, Thank you.

What we are made of

    What are we made of?  Sometimes we don't really know until we are pushed into circumstances we never thought we would be in.  Reflection on past memories, Present, and the Future can bring insight on what we were, what we are, and who we may be years down the road.  I reflect a lot on past situations, how I reacted, and how I would react now.  We may mature through the years, but our core never changes.  We are that same person we were years ago, just grew up through the years.  I have grown up, pushed to grow up wether I wanted to or not.  I think as a Mother we forget we are more than that.  We still have an identity besides that, don't forget that much more makes up who you are than that just one thing. 
     I think as us women we forget that we need to find times to ourselves to remember who we are.  If I didn't go to the gym I would most likely be having lots of anxiety right now I will be honest.  Do I eat very healthy? No I don't, I should work on it but I haven't.  My coping mechanism with everything going on with Lucy is going to the gym and making/baking things off Pinterest.  Would I love to weigh less than I do? Of course I would!  I haven't gotten to that point mentally where I am strong enough to fill the void of crap food with something else.  I will eventually, but right now I still am working on how I feel with everything going on in my life. 
     All of us have rough periods in life.  Take a moment to reflect what those moments were or are. What did you did during that time to cope?  When I was 15 I had a bit of a rough time, and then when I was 17 I had an even harder time.  I don't think Highschool was a good experience for me it just wasn't.  I had much more of a better experience in Junior high, that may be weird but it was better. When I was about to start senior year my dog I had since I was 4 died, I had never felt so sad in my life.  And then I started Beauty School that summer and I was wondering if I could over come my shyness to do this.  I was learning that  Girls are Snobs, but I was having fun trying something new and I was getting out of my box.  During this learning time, a good friend of mine died unexpectedly in a car accident.  I felt guilt because we had a falling out and we had just talked a week or so before about being friends again.  I felt so sick to my stomache during that time, students were capitalizing off his death saying how they knew him and were friends with him. Like they wanted people to give them attention and feel sorry for them.  When I knew they werent.. I knew who he hung out with and those people didn't try and capitalize off of it.  I can't understand why people would do that.  I felt so depressed, I know a lot of people laid to rest at Kaysville Cemetery.  I hate going there, I absolutely hate it.  And I know some people feel better when they go, I feel horrible and I almost have an anxiety attack.  Too many sad situations have occurred, and I think about all of them when I just go in there.  I think of their families and how they are doing.  Bad things happen to good people.  I know life is a test, but it still is heart breaking and doesn't make sense to me why it happens. 
      One day I am going to have to face my anxiety with cemetaries.  I don't want to, but I am going to have to.  Most likely Lucas and I will outlive our little Lucy.  I will enjoy the years she is with us, and be grateful for them always. 
      Now, I would like to talk about something sort of personal, but I think woman would benefit from this.  I just took my last dose of Zoloft a few days ago.  I honestly have felt waves of emotion and I even weaned myself off of it.  It wasn't a good time to get off of it while my husband is away haha...  After I had Dawson I had Post Pardum.  I never took care of it, and I wish I had.  This time with Lucy it didn't hit until she came home.  I locked myself in the bathroom crying because I felt so overhwelmed.  My hormones were getting the best of me and I knew it.  This time I wasn't going to mess around with it and I saw my OB and he helped me out.  I think Post Pardum is a serious problem that woman ignore because they think that they are horrible if they take pills for it.  To those of you that are against Anti Depressents and Husbands I am talking to you too...  you don't know what you are talking about.  Some people do need help and Lucas knew I did.  A woman goes through soooo much when having a baby.  You may go from working full time at a job to working full time as a first time parent.  Or, you may be going back to work after you have the baby and it breaks you to be away from your child.  Some people need to be on Post Pardum medicine for a period of time or permanently and nothing is wrong with that.  I just want women to know not to be ashamed if they need help.  Sometimes all those B vitamins just won't cut it.  Having a baby is life changing, and you will feel guilty sometimes and wonder if you are doing a good job of being a Mom or not.  Don't beat yourself up about it. 
    Most the time I am a pretty positive person and I am glad I am.  I have to be right now or I would go crazy.  And some moments I do go crazy I am not going to lie.  Something that has bothered me lately is the statistic of women having a child with a chromosome abnormality past the age of 35.  You have to have a child before then or you will have a child with Down Syndrome or something like that...they say... whoever they are..  I think that claim is completely false.  From all the women I know that have a child with chromosome abnormalities only 1 was past the age of 40.  I agree that as a woman our eggs are numbered and that you shouldn't wait too long for that reason.  The longer you wait the more you are taking a risk in being able to bear children.  Not because of Chromsome abnormalities, I think that claim is bogus.  In the NICU I asked about it with the Nurses and they even told me that more babies they had seen with abnormalities was from a younger mother.
     It's a complete miracle to have a child it truly is, to have everything go right is a miracle.  And it didn't for me.  But, I have a sweet beautiful child that has the strongest spirit I have ever met.  Her physical body may not be made in perfect form right now, but her spirit is and what a beautiful spirit she does have.  God has a plan for us, and even though we may not understand it we will one day.  One day we will see our loved ones in perfect form, think of how wonderful that day will be. 

Lucy's good dream

Here is an adorable video of Lucy from last night.  I wonder what she was dreaming about :).

Life As We Know It

Here are some updates on our lives.  Lucy had surgery on May 4 which you all may know.  She has hydrocyphallus.  A shunt was put in her head and they made an incision on the top of her right fontanelle, behind her right ear, and another by her belly button.  The biggest incision is on top of her head, they put the resevoir in there to help drain the spinal fluid.  It's on a medium high setting and the doctor can switch it with a special magnet if he needs to, modern technology=awesome.  The shunt will always stay in her, unless it fails and she needs it replaced.  We were lucky to have this caught in time before it damaged her brain.  We have no way of knowing why it happened, except it was most likely caused from her genetic anomoly.  I have read that a couple of kids had hydrocyphallus from a duplication they have on q28 so that pretty much solves my question.  Lucy is off and on oxygen through the day and on it through the night.  I luckily own a monitor to check her oxygen levels.  After so long after you rent it, I guess you end up owning it so that is nice.  After Lucy was out of surgery I met her at post of surgery area.  It's like a NICU with just curtains separating the patients.  Of course while I was there a child D Sat across from us and I saw about 20 doctors and Nurses rush to the child's bedside.  Luckily the child survived and they all cheered.  My heart was pounding out of my chest, while the nurse with Lucy tried to act like everything was ok so I wouldn't freak out.  Second time I have witnessed that, and I fear it won't be the last.  During our stay I made myself acquainted with the cafeteria and ate a bunch of treats.  They have an awesome cafeteria and I know I will be vegging out everytime I stay there.  I attended the sacrament meeting, it's just 30 minutes long.  As soon as I walked in the room I felt this overwhelming spirit.  It felt like the wind was getting knocked out of me, I began to cry while I was singing the opening hymn.  Watching children be wheeled in, and parents who are struggling.  It was testimony meeting, and before the bearing of testimonies one of the bishopric came up and spoke.  He talked about Elder Worthlin's talk he had given from years past.  About the horrible Friday with Jesus and how devasting it was.  And then came Sunday, the resurrection of Jesus.  He told us although we may be having our Friday, there will be a Sunday.  Of course I bawled and so did all the other people.  Listening to testimonies was inspiring.  One little boy kissed and hugged his mommy when she came back from bearing her testimony.  He hated seeing her sad, this little boy that looks about Dawson's age that was in a wheel chair.  I was really glad I could attend that meeting and how inspired I was by all the wonderful parents and children around me. 
I can't tell you how many years I will have Lucy, I can't tell you if she is mentally handicapped or not.  I can't tell you if she will ever walk or talk.  I just don't know the answers, only God knows.  I know this has been hard on my family, some have taken it even harder.  To you I say, Lucy came here for a reason and to help all of us.  Don't let this break you down, keep your head up, her Sunday will come and she will be healed.  As I type this Lucy is smiling in her sleep, she is a beautiful girl that has taught us so much and continues to teach us daily.  What makes us as a person is our Spirit.  Lucy won't be tempted by the outside world, and that is a good thing. 

I have so much to be greatful for, so many blessings have happened in my life.  I am surrounded by amazing people Family and Friends.  Some have come and gone and some have passed on to the other side.  I am greatful for all the many wonderful people in my life.  Life lessons are hard, but this life wasn't made easy for a reason, and it sucks but thats how it is.  I just hope to continue on striving to be better.  I thank you all for the love and support as always xoxo.

Update

Hello Friends, just wanted to give you an update on Lucy. She is 7 months old today and weighs 11 and a half pounds.  The results of her EEG came back and she doesn't have Hypsarrythmia anymore which is great news!  That stuff is horrible, causes development delays and so forth.  Her brain patterns are really abnormal though, which means she is very pron to having seizures.  She was having discharges in the brain that were showing signs of it.  Her head all of a sudden jumped from 0 to 50 percentile on the growth chart so we are concerned she has fluid building up in her head.  The doctor was going to get back with me about giving her a CT or MRI.  I had to put the NG tube back in her nose last night. The past few days her sucking ability was steadily declining.  The doctor thinks it's her body normalizing itself after being on the steroids.  Also, a possibility if the swelling is causing her to not want to eat either.  Last weekend Lucy started smiling again :).  I can't get her to smile, she just does it on her own.  I have heard a little chuckles out of her too.  I guess yesterday she made laughing sounds when Lucas and Dawson were laughing with one another.  Lucy must have want to join in too, which I could've seen that. 

How many appointments will Lucy been to the Month of April.  A whopping 14 appointments, luckily most of those are at my home.  She has seen her Pediatrician, Eye Specialist, Occupational Therapist, Physical Therapist, Geneticist, EEG Lab, Nurse Visit, Coordinator Visit. Ah, Im so tired... :) I am really glad she gets all of this help.  The Physical Therapist is coming Monday and she will have equipment for Lucy to use to help her sit up.  Lucy has been holding her head up more lately which is encouraging.  Im sure it feels like a big Bowling Bowl she is trying to move around.  Lucy has something called CVI (Cortical Visual Impairment).  Meaning structuraly her eyes were formed right.  Something in the brain is not triggering the eyes like it should be.  Most the time CVI can improve, which is good news.  Glasses won't help her, just therapy. She won't be able to see fully, and we will have to help her the best we can.  It's like she can see sometimes and other times she can't track at all.  We will keep working with her, and luckily the eye specialist comes out 3 times a month to help us. 

As a family we are doing well considering everything we have been through.  I was upset when I had to put the tube in last night but oh well.  It's expected to happen, at least she likes to eat baby food and rice cereal. Maybe when she is old enough she will take a cup? I am hoping to get tested sometime in the near future if I carry this chromosome anomaly.  I need to know because if I am it's a 50/50 chance it will happen which is a huge number. If not, then this happening again is no bigger odds than anyone else.  I don't plan on having more kids for a long while, but it would be good to know in advance to think of options for the future. Lucy is such a strong little girl, she give us courage through the hard days.  When we have good days I really soak it in, might as well right? Because a bad one is going to come and it will make that much more grateful for those good days. 

During General Conference, we were all hanging out around the TV and on our bed.  I was starting to feel a little sleepy, and then I hear the words Chromosome Abnormality from the TV.  Lucas nudges me and our eyes glue on the screen.  Listening to Elder Rasband's talk about his grandson was so humbling for us.  We both started sobbing, Lucas held me while we just bawled. My phone starts vibrating from Family and Friends asking me if I was seeing this.  Every night I would pray to Heavenly Father letting me know I am not alone.  Just to give me some sort of sign that he is there watching over us.  This talk could have came out any other time, but it was given at that moment I needed it the most.  As my sister Maryanne said to me he is aware of what is going on with us.  I have never felt such a peace and calm in my whole life.  It helped me not hold anger and to just let it go and be at peace.  One day will be different from the next, but my baby is here and thats what matters.  She has such a strong spirit, and people tell us that.  Sometimes they start to cry when they are around her, because you can feel it.  Maybe it's the Angels that surround her, because they do.  We all can feel them when we are with her.  

I know most of you aren't quite sure of what Lucy's condition means.  Neither do we really, we won't know how she is mentally until she gets older.  She obviously had delays, but she is trying her best.  And a lot of it is due to her low muscle tone, it's a workout for her doing things that come so easy for us. What is awesome though is that the Hypsaryythmia is gone.  The Neurologist said that usually it doesn't come back :).  That is something worth celebrating I think.  Bring out the Sparkling Cider! ;)

Life is crazy..

Hello world, my life has been crazy. A beautiful, scary, unknown, wonderous life. I could use so many other words to explain how I feel. Since I have blogged I have a beautiful baby girl who has a rare chromsome abnormality called Xq22-q28. And a lot of wording goes along with it. Honestly I don't think very many people understand what I am telling them when I explain it. I think the best person that knows what it is is my Mom haha. I use to think chromosome abnormalities were just the deadly ones like Trisomy's or the well known Down's syndrome. So many abnormalities are out there and people just don't know it unless they know someone or are experiencing it themselves. When Lucy was first born she was a little peanut 3lbs 9.5 oz and 15 incles long. It's a complete miracle this child was born alive. She was in the NICU for almost 7 weeks. The first couple of weeks were very up and down for me. Not being able to take your child home from the hospital is excruitating. I balled and balled when we got home, and it doesn't help when you are hopped up on pain pills. Also a baby had died next to Lucy in the NICU and it had me shaken up.
Lucy had all these tests run on here to see why she was born so small. The Placenta was small and her umbilical cord was smaller than the width of a pencil. She has the smallest belly button ever, I challenge anyone to show me a smaller belly button haha. Her tests were coming out good until one day the nurses say they had gotten some results and to talk to the Neonatologist. So, I get on the phone and Dr. Burgar tells me that she tested positive for a chromsome abnormality. I was so confused, and had so many emotions running. They were going to do a more extensive test called a Micro Array Essay to see exactly what it was. Almost 2 long weeks go by and then another one of the Neo's comes up to me and says they got the results. He takes a look at it and says really loud "Oh My Gosh I need my glasses". Me and my Mom are pretty much horrified as we watch him run out to get his glasses. He sits us down and says well I'm telling you something you already know. And I'm thinking I have no clue what is going on. So, I ask him and he really doesn't know. He is an interesting fellow, I like him but don't like him. I was so confused... I had to wait to see a Geneticist. I spent many days just having a smile on my face, and then I would run away somewhere and cry out of nowhere. It wasn't very often, but I had my moments. When we saw the Geneticist it was after the seizures started, those crappy seizures. Those seizures I invision in my head when I punch the crap out of the bag in Kick boxing class. She was doing pretty well and then those started and the crap hit the fan. Ah.. that is when I started to really lose it and just cry and cry and Lucas would just reassure me. Me and him have had to reassure each other through these tough times. Lucas doesn't like to talk about it, it's a guy thing. Guy's cope differently than girls, girls just pour out emotions. Guys say like two words and walk away haha. Not all guys but most guys are like that. My beautiful baby girl has some development problems we are trying to help her with. She is currently on steroids and a bunch of other meds. She is only on her oxygen at night starting this week. It's nice to see more of her beautiful face. She takes baby food now which is awesome. She won't drink a bottle, it's not going to happen for her again it just won't and thats ok. I dedicated so much effort and time to get her to drink her bottle. It was a horrible task... but I am stubborn and I got her to drink her bottle. I feel like a feeding expert now, I think I could feed any baby a bottle now. Lucy still would be taking a bottle now if it wasn't for the seizures. But, that is life and life can suck. For the most part life has been good for me and my family. I know some people have said I wouldn't change my child. Nothing is wrong with your child or my child that has special needs. But, they are wrong. Our children do have something wrong with them, it's life and I would change my child if I had the choice. To want your child to be healthy is not selfish or wrong, we don't want our children to suffer. I don't care about myself, I just worry about a child hurting. The child I carried for 9 months and didn't know if she would make it to birth. This child who is tougher than you could ever imagine all 10 lbs of her. She is such a strong fighter, and that is why I am here to be an advocate to help her. She does have something wrong with her, I know this and that is why we have many doctors and programs to help children like her. Denial is hard for parents that hear that they have a child that has special needs.
My daughter Lucinda Jane has an extremely rare chromosome abnormality that doesn't have a name. She has a disability and is a special needs child. She needs to be fed through a tube to live and on a low flow of oxygen. She has Infantile Spasms with hypsorrythmia. Hypsorrythmia can lead to something horrible if not fixed. She is on Prednisolone to help stop them. She acts like a newborn and cannot lift her head. She cannot track objects very well because of the hypsorrythmia. She has up to 10 appointments a month with doctors or a specialist of some sort. Now, if I were to ignore what Lucy has she would not get help that she needs. She may lead a good life one day because we took action. Because, I acknowledge she does need help. That is why we have these hospitals, we want to help our child's problems so they can thrive. I hope this makes sense to everyone, but this is how I see it. I love my baby girl, and I want her here and I want to help her the best I can. I do not want her to suffer, she is fighting so hard to be here so I need to fight back and say "Oh no you didn't" :). This is my life, I am so grateful she is here now that is what I wouldn't change. I just want to help her be happy and smile again, that is a goal worth striving for. Because, she gave the best smiles. I love my son, who I will just hug and hug because I am so grateful for him. I love that little guy so much, he has my heart in his hands. He is a beautiful little boy who will have the girls chasing him one day. I love my children and am so grateful they are here. I love them with all my heart. Being a parent is such a blessing, and I am so greatful I am one.